Seeking Help from Members Based in Europe Regarding Treatments / Doctors

[Mandalay]

Hi there,

I just joined Tinnitus Talk today, but I have been reading for a while.
I introduced myself first and now I hope I can post some questions to member based in Europe.

I would really like to try a medical treatment, Keppra, because I'm also suffering from hyperacusis, and I want to try if Keppra can alleviate it.

If it doesn't work I would also give Xanax a try because on bad tinnitus days it could help me a lot I guess.

Both, Xanax and Keppra can alleviate tinnitus, as far as I know.
Sometimes also Xanax can bring permanent relief, so at least I could try it.

BUT the thing is:

I'm based here in Germany and my impression is that the ENTs never want to prescribe medical treatments or prescription drugs.
They only offer things like "getting used to it" or "TinniTracks".

It's a shame that I can't even try it, if it doesn't work - ok, I have to deal with it.

I have read many Tinnitus Talk members have gone to a Neurologist or their ENT has prescribed them medical treatments, drugs, etc.

I don't even know if I can or could go to a neurologist, asking for support. Actually I also don't have the courage to ask for a Neurologist, and maybe I would also need a referral from another doctor to go there.

And I guess if I'm taking (for example) Keppra, I should be checked by a Neurologist.


Can you give me any advice?

Of course I know I could organise Keppra or Xanax somewhere "over the counter" without prescription, not accompanied by any doctor, but is this the solution?


How did those of you based in Europe manage that?
Were you maybe paying privately?

Thanks,
Mandalay

PS: I hope my English is at least understandable

 

[Contrast]

ENTs IN GERMANY ARE HORRIBLE! I know two German individuals on this forum and they had "pain hyperacusis" and were never diagnosed when they told the doctor "burning pain from noise", they weren't familiar with it at all.

Based on what I was told, German ENTs believe tinnitus goes away with stress reduction and have their own Deutsche Tinnitus League which is cancer just like Pawel Jastreboff here in the United States and TRT holding back tinnitus research.
Link to the DTL's website: https://www.tinnitus-liga.de/

There is no such thing as just hyperacusis. Hyperacusis defined as "pain from noise" is not the same thing as hyperacusis defined as "noises are too loud" even if they go together.

Source: https://www.entandaudiologynews.com...iological-mechanisms-of-hyperacusis-an-update

 

[Autumnly]

I'm based here in Germany and my impression is that the ENTs never wanna prescribe medical treatments or prescription drugs.

I'm also from Germany and had similar experiences. German ENTs, or perhaps ENTs in general, don't seem to take tinnitus very seriously.

"TinniTracks"

"Die Deutsche Gesellschaft für Hals-Nasen-Ohren-Heilkunde kann die Nutzung der App nicht empfehlen" (The German Society of Otolaryngology cannot recommend the use of the app)

1000 German users rated the app:

• 52% said the app had no effect
• 11% said their tinnitus got worse
• 5% said their tinnitus got significantly worse
• Source (in German)

Of course I know I could organise Keppra or Xanax somewhere "over the counter" without prescription, not accompanied by any doctor, but is this the solution?

I'd say ask your general practitioner (Allgemeinmediziner) if they would prescribe those medications. Keppra and xanax are not something you'd want to take daily for a long period of time. I'd say most people on here using those drugs only take them on days when their tinnitus is very loud and they need a break.

 

[Mandalay]

Hi Autumnly, and Contrast,

thanks for answering me, and yes, ENTs are just horrible in here (Germany), thanks for your verification

And Autumnly, can I ask if you ever tried getting any medical treatment prescribed?

And did it work?

Did somebody based in Europe ever had success of prescriptions from a doctor?


Thanks, Mandalay

Edit: of course I don't want to "fuddle up" myself now with medical stuff, the point is that I read
some success reports of also a permanent relief, from Keppra and from Xanax so I just wish I could try them, and I want to try Keppra first because it seems, well, sort of "safer" as far as I understand.

 

[Autumnly]

And Autumnly, can I ask if you ever tried getting any medical treatment prescribed?

Never tried Keppra or Xanax. I've tried some anti-seizure drug (not sure what it's called) before but I didn't change my tinnitus at all. My GP knows how much I'm struggling, so I printed out the study that said it had helped some people for him and we tried the drug for a month.

 

[EDDTEKK]

Hi,

I am also from Germany. Find a good psychiatrist and show him your findings and ask if you can try this and ask if he wants to support you. If he doesn't, search for another one.

I did the same. If this doesn't help, contact the Tinnitus Center in Regensburg. They will absolutely support you and prescribe medications you can try. This will help you get the medication from your doctor in your area, once Regensburg has done the diagnosis and medication treatment proposal.

 

[Mandalay]

Hi Autumnly,

of course it's a shame that it did not work, but you managed to convince your doctor for a prescription of medical treatment, that's great. I guess the GP is what we call "Hausarzt" in German, right?

If I can read more experiences like yours I think I will have the courage to try and ask for a GP or Neurologist, I guess

Thanks,
Mandalay

 

[Mandalay]

Hi EDDTEKK,

Wow, thanks for your advice. That sounds really great.
Tinnitus Center Regensburg, I never heard of it and I will google it now

That is good news, thanks,

Mandalay

Edit:
Is it this one?

http://www.tinnituszentrum-regensburg.de/

 

[Autumnly]

I guess the GP is what we call "Hausarzt" in German, right?

That's a better word for it! I saw my usual Hausarzt and showed him the study.

 

[Mandalay]

Hi Autumnly,

thanks a lot. I see it is worth a try

Mandalay

 

[Arseny]

You can try LLLT. It may help, but since you have had tinnitus since 2001 there's no guarantee. Although there are studies that it can help if you had recent hearing loss.

There's a clinic in Baden-Baden.
https://www.lumomed.com/baden-baden-2/
There's also a clinic in Sweden
http://www.alir.nu/alc.htm

You can also purchase your own laser for home use. Lucky Laser seems to be the best. You can get it for 2100$.

General information regarding LLLT:
http://photobiology.info/Hamblin.html
https://www.dovepress.com/near-infr...therapy-ef-peer-reviewed-fulltext-article-NDT

 

[Mandalay]

Hi Arseny,

It's interesting that you mention LLLT, but I already tried it in 2002 at Dr. Wilden's place when he was still based in Bad Füssing, Germany. To me it did not work at all. I guess everyone is different.
For some people it worked, for some it did not.

Well, my tinnitus is not that bad. I have days where I don't even think about it. But also I have bad tinnitus days where it annoys me a lot, for example yesterday. Its the same with H, sometimes I feel I don't have hyperacusis at all, but then it comes back, but goes away again as well. Its difficult to describe, maybe I can say my tinnitus is very fluctuating, not "stable" in any kind.

And because of this, my tinnitus not being stable, I'm guessing that a "potassium channel modulator" can help in my case.

I guess it depends on the person and the case. So that's why I'm thinking it's a shame if I can not try it.

Being based in Germany simply means that ENTs tell you a lot of nonsense. Usually the nonsense starts with them saying "no the tinnitus cannot become louder, it's only your perception". That's where all the problems start. They end up telling stupid things. One more example is, they say that noise exposure only makes a further damage if one is exposed to 90 dB during 8 hours, which is of course not true. I could continue like this.

They don't have any idea about medical treatments, "potassium channel modulators" or anything else.

It seems to me that ENTs in the US for example at least try to prescribe medical treatment, if it does not work, it was at least a try. And if I don't try it, I never find out.

So now I try to find a doctor who supports my "experiment", (with Keppra), of course I can always do it off label.

I will see how it goes, I need to take all my energy and start a new conversation with a tinnitus "doctor".
It can be exhausting, my last visit at a ENT was, because what she said was so, sorry, stupid.
I left and never came back.

Thanks,

Mandalay

 

[SashaG]

The health system in Germany is terrible, there is no doubt about that. But what should we do, take a flight to the United States? It might make it even worse, due to all the stress and noise, so we have to take what we can get. It´s also a financial issue, if we can´t work, we get no money, so we are stuck in the country.

My first ENT did do nothing either, just told me to relax and come back 3 months later. I was shocked!

My second ENT finally started with treatments, but there is no guarantee the tinnitus will go away. I have also been checking in Europe for a good doctor that can restore hearing, boost the inner ear regeneration but there is nothing to be found. Dr. Wilden I saw, some people say he is fake, others say he is good. There is a website, with a lot of information about tinnitus, and the psychological aspect. I felt it was a great read and very motivating.

The fact that cells regenerate always, that the sound many hear is just a loop of something from the past, is good to know and something I can relate to. It explains why so many recover, yet many never speak about it, out of fear it could come back.

I have gone through a couple of health issues in my life and no doctor has ever achieved anything for me, it was always my own doing and I believe it's not much different now. My doctor now does give me meds and I take them, my neurologist might also give me everything, she has always said so, but I hate meds and don't want to take them easily. It's easy to take something for sleep, to be knocked out... but it does not fix the noise or damage.

The first time I took meds was about 7 weeks ago, antibiotics for 3 weeks prior to my tinnitus and guess what, the result I have now. Without them, my ears would have been stronger and harder to take down by the MRI sounds, that's for sure. I had several MRIs, some were louder, but nothing bad ever happened. Why did I listen to the doctor, I was so stupid...

I wish you luck on your journey, report your findings and be careful with our health system, always second guess it.

 

[Autumnly]

Being based in Germany simply means that ENTs tell you a lot of nonsense. Usually the nonsense starts with them saying "no the tinnitus cannot become louder, it's only your perception". That's where all the problems start. They end up telling stupid things. One more example is, they say that noise exposure only makes a further damage if one is exposed to 90 dB during 8 hours, which is of course not true. I could continue like this.

So sorry to hear you had those experiences. The situation is really bad in Germany when it comes to tinnitus. The German Tinnitus League isn't better either, most doctors associated with it would tell you the exact same nonsense, just for a higher price. German tinnitus support groups usually also have a "holistic approach" which means they are also convinced that everyone just needs to destress. It's actually quite frightening that there are ENTs that truly believe tinnitus can't get worse.

 

[EDDTEKK]

I have been to at least 12 ENTs in my tinnitus career. There was absolutely nobody who was educated about tinnitus or had any idea of current research. They are not interested in tinnitus at all.
Nobody told me to try different drugs or neuromodulation techniques which sometimes helps in special cases. The only center which offered these approaches was the Tinnitus Center in Regensburg, where Prof. Dr. Berthold Langguth has the lead.

Don't waste your time at ENTs for chronic subjective tinnitus. Contact Regensburg and discuss your situation with them or best case with Dr. Langguth.

 

[Mandalay]

Hi everyone,

thanks for all your replies, Tinnitus Talk seems like a good community, I'm glad to be here.

I guess now I can make up my mind and try it one more time, I will contact the clinic in Regensburg, as you recommended, EDDTEKK. I can risk a phone call

Reading here I learned a lot, I know now that each person's is different, and also the causes are different.
There is no way to find a "one fits all" solution. And many doctors have simply wrong believes.

In the beginning I never expected it that way.

Good luck for all of you,

Mandalay

 

[Mandalay]

@EDDTEKK,

Hi again, I hope I can ask you another question. Right now I don't know how to send a private message, I could not figure it out, or maybe I can't send them because I'm too new to the forum.

I'm already planning on how and what to ask at the Tinnitus Clinic in Regensburg, the more precise I can be the better it will be.

The major point for me now is that I'm preparing myself for "how to speak with them".
(I don't want to try rTMS for example, even if I could, I read about tinnitus sometimes worsening from it.)

You wrote that they (at Regensburg) prescribed you medical treatment, or made it possible to have it prescribed.
As I understood you have no permanent improvement from that but at least they gave you the chance.

One treatment was Carbamazepine I guess, can I ask you what else you tried?
And have you had side effects?
Did this Clinic make it possible that you were supported by a local neurologist?
Or did you just "take it"? Or was it that they examined your health?

Thanks,
Mandalay

 

[EDDTEKK]

Sent you PM.